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July 17, 2011           

me+ME: More on the DSM-5


There was no Nederlog yesterday, and I had assumed a few more downloads of the last Nederlog on my B12 protocol, which incidentally is not a protocol that I thought up or discovered, but one that I do follow, with some minor personal tweaks, because it is an elementary empirical fact that it helped me so far, and more so than anything else I tried. 

Also, in case some may have missed it: I follow it because it helps me, but I have no dogmatic notions about its effectiveness for others, or against ME/CFS, or indeed whether it may cure or only helps: I do not know, and can only guess. However, I do find it interesting and helpful for me, and it may be worthwile for some to try it out experimentally themselves, which is why I put my information on line.

But in fact there were hardly more downloads the last days, and maybe the explanation is that people are on holiday or else that some of my readers were displeased with my GW: On humanity and humaneness that may have struck a few as being - a tad cynical or realistic. (If so, I am not sorry, for one thing because I live in a nominally Calvinist country, where the majority of my country-men believe - what implies - that most men are fit to be send to hell, to burn for an eternity, as they have been born in sin.)

Anyway... here is a little more on the DSM-5, about which I wrote, at length also, in my own submission to the APA about it:

You can find out much more about the DSM-5 on Suzy Chapman's DSM-5 site:

There you find a list of submissions to the APA about the DSM-5:

There is still time to submit your own comments, for the APA lengthened the period for comments by "the public" to July 15, and then, when it became clear that the WYSIWYG editor they forced people to use (that I also had problems with: it's more WYSI not WYG) stopped working, to July 18, which is tomorrow.

Under the last link you find quite a few submissions. I give links for two from the Massachusetts CFIDS/ME & FM Association (actually, from 2010 - but the reasoning still applies):

Incidentally, while the letters are good, the name used is mistaken, for it is DSM-5, but then even the editors of the DSM-5 wrote "DSM-V", while being paid, wined and dined for writing proposals for it, that incidentally shed a whole new light on the meaning of the phrase "dysfunctional belief systems", so I only register this in passing.

Then I quote a good submission by a US-patient who addresses quite a few issues quite well, quite politely and in a brief compass - and I mention the patient's politeness because my own submission is less so, but then I am a psychologist and a philosopher of science:

and either I don't know what's science, logic and psychology at all - and consequently neither does the staff of the faculty of psychology where I got my excellent M.A. in it - or else the DSM-5 is neither scientific, nor moral, nor consonant with my understanding of medical morality: Primum non nocere.

Here the US patient's submission is:

Submission from US patient 1

For the attention of the DSM-5 Task Force and particularly to the members of the Somatic Symptom Disorder Work Group:

I have reviewed the draft for the proposed category of Somatic Symptom Disorders, and in particular Complex Somatic Symptom Disorder (CSSD), and find major flaws in their diagnostic philosophy and criteria that would easily lead to the misdiagnosis of, or unwarranted add-on psychological diagnoses for, any number of physical diseases or conditions with no psychosomatic component, but which lack clear biomarkers, sufficiently diagnostic tests, or are comprised of medically unexplained symptoms. I strongly recommend that the clinical viability of the SSD category be re-examined and that the CSSD category be abandoned altogether.

There is a fundamental flaw in the way 'somatic symptoms disorders' are described in the latest draft:

"This group of disorders is characterized predominantly by somatic symptoms or concerns that are associated with significant distress and/or dysfunction...Such symptoms may be initiated, exacerbated or maintained by combinations of biological, psychological and social factors."

This is unacceptably broad characterization. How many diseases exist in medicine that would not in some way fit this description? Virtually all immunologically-based diseases, and most pathogen-associated ones, could hypothetically be impacted by biological, psychosocial, and social factors. Yet initiation, exacerbation and maintenance can represent completely distinct etiologies, and "combinations" of biological and psychological or social factors could include, again, almost every disease in existence, including those for which there is not hard evidence (or evidence at all) to suggest that psychological intervention makes a significant impact or indeed that there is a 'psychological component' to the disease that can be isolated at all.

That brings up the essential problem with the entire concept of somatic symptoms disorders - they are based on an amalgam of clinical observations and scant psychological studies that are overwhelmingly poorly powered. Psychology in general (and psychosomatic study in particular) is an inherently difficult field in which to employ an empirical scientific approach, so it is largely inappropriate to treat the concepts that emerge from psychology on an empirically equivalent footing with the more rigorously positivist data that supports biomedical findings. The two are often philosophically incompatible; the concept of somatic symptom disorders is highly metaphorical, and its broad application in clinical medical practice can only lead to confusion and misdiagnosis. This is especially true in its application to diseases that are poorly understood. The precise etiology of these illnesses is still hotly debated; many clinicians and biomedical researchers who specialize in them are in total disagreement with psychosomatic specialists who speculate upon a role for psychiatric components based on studies within their own field. Therefore, until these poorly understood illnesses have been more thoroughly researched, it is wholly unscientific to assume a role for psychiatric factors in disease causation, initiation, or persistence. To do otherwise would be to inappropriately create a psychiatric diagnosis for many patients who may not require one, which carries with it the potential for iatrogenic harm and social stigma.

Is there any medical evidence that the condition(s) defined by these criteria actually exists? Has it been accepted by clinicians who treat, for instance, diabetes? Has the DSM-5 working group consulted physician's organizations about the concept of adding such psychiatric diagnoses to essentially any medical condition? Has the impact this will have on healthcare delivery and insurance reimbursement truly been taken into consideration during such consultations? I suspect not, yet these are vital subjects.

The proposed categories and guidelines will create a scenario where a clinician will have too much power to determine whether a patient's response to their bodily symptoms and concerns about their health are "excessive", or their perception of their level of disability "disproportionate". It will create a tendency towards violation of the precept of "do no harm" by compromising the centrality of patient input and the equality of the doctor-patient relationship. It will compromise the ability of clinicians to continue to reassess a case over time through empirical observations by encouraging an a priori framework and subjective bias in the clinicians' minds. The effect for patient care could be disastrous, as legitimate and significant complaints could far more easily be ignored; further, insurance reimbursement for biomedical tests and treatments is certain to suffer when a psychological diagnosis is added to the physical one.

A clear example involves the proposed CSSD category and its potential effect on patients with myalgic encephalomyelitis (ME), or chronic fatigue syndrome (CFS) - hereafter referred to jointly as ME/CFS. As defined, a CSSD diagnosis could be inappropriately applied to patients with ME/CFS - a disease for which a solely physical pathology has been firmly established. Too many ME/CFS patients would easily fall into the sinkhole of the excessively indeterminate and highly subjective diagnostic criteria for CSSD.

As stated in the draft, CSSD diagnosis requires that criteria labeled A, B and C be met; the first and last are obviously met by ME/CFS as well as any other chronic physical disease. The second is outlined as follows:

"B. Excessive thoughts, feelings, and behaviors related to these somatic symptoms or associated health concerns: At least two of the following are required to meet this criterion:

(1) High level of health-related anxiety.

(2) Disproportionate and persistent concerns about the medical seriousness of one's symptoms.

(3) Excessive time and energy devoted to these symptoms or health concerns."

The determination of points 1-3 is far too subjective for this to be the only criterion standing between a patient with a poorly defined physical disease and a misdiagnosis of mental illness. Whereas such a criterion should be highly discriminative between physical and psychological elements, criterion B focuses upon psychological assessments of highly questionable empiric strength and clinical value. As it is incapable of distinguishing many physical symptoms and distress from psychological ones, it would heavily overdiagnose psychopathology. The preconceptions and limitations of the practitioner become far too important here, as do highly subjective judgements; to let these elements potentially intrude into the realm of physical disease diagnosis is a grave error. Let us consider each of the subcriteria 1-3 in turn, with relevance to ME/CFS:

(1) - ‘Anxiousness’ or anxiety is a ubiquitous and extremely frequently diagnosed symptom. The health concerns of the majority of ME/CFS patients are similar to those of HIV positive patients; however, absent the same diagnostic clarity and the same degree of biomedical knowledge about the disease process, the concerns of ME/CFS patients are all too easily dismissed as excessive, i.e. anxiety, by clinicians who know little or nothing about ME/CFS. It should also be noted that the experience of having any medically inexplicable and likely untreatable disease itself can engender a high level of anxiety, yet that fact is not taken into consideration in this criterion. Thus in both ME/CFS and other conditions that are less understood, it is exceedingly easy for a clinician to inappropriately apply subcriterion 2.

(2) - The assumption that every clinician is suitably educated about every physical disease is obviously the Achilles' heel of this and the other subcriteria. Although ME/CFS is a serious physical disease that affects a rough estimate of a million people in the United States alone, it sadly is misunderstood and/or not taken seriously by the majority of clinicians, who know little or nothing about it. (The situation is actually similar for many other conditions for which a physical cause is never even questioned, such as adult mitochondrial diseases and various dysautonomias.) How can a clinician who knows little or nothing about a disease determine the medical seriousness of a patient's symptoms, and therefore whether a patient's response is disproportionate? And if the disease is chronic in nature, would it not be normal for a patient to express 'persistent' concern about it?

Part of the problem arises when a clinician considers certain bodily symptoms to be ‘normal' regardless of context. It should be clear that a symptom is not something that can be standardized, yet members of the DSM-5 working group have previously stated that ‘orthostatic dizziness’ is a normal bodily sensation. This is a dubious statement indeed; it is not normal to experience this symptom chronically or severely. Various forms of orthostatic intolerance are very common in ME/CFS, causing persistent or recurring dizziness that is certainly not normal and should be treated if possible.

Another issue is that a practitioner who is simply unaware of some of the hallmarks of ME/CFS will all too easily mischaracterize genuine patient concerns as excessive. As just one example, if the practitioner is unaware of the phenomenon of post-exertional decline, s/he will easily mistake an ME/CFS patient’s concerns about relapse, etc from overexertion for ‘catastrophizing’.

Thus, subcriterion 2 could be wrongly attributed to an ME/CFS patient by any practitioner lacking in knowledge or understanding of the disease and of research on the disease. Given the extremely poor state of medical education about ME/CFS, the likelihood of inappropriate labeling is great - a point that cannot be overstated.

(3) - Any disabling or distressing physical symptoms of sufficient intensity can dominate a patient’s life; thus subcriterion 3 is so lacking in clinical rigor and definition that it could be applied incorrectly to those with almost any disease with no psychopathology, but especially to ME/CFS patients due to the relative ignorance of a majority of clinicians about the disease.

Thus, false identification of criterion B in ME/CFS (and other diseases) can occur too easily and in too many ways for it to have any real diagnostic value. As criteria A and C are also met by default in ME/CFS, that means the CSSD criteria as a whole will in clinical practice almost certainly result in the misdiagnoses and the erroneous labeling of many ME/CFS patients with CSSD.

In this context, it should be remembered that the repercussions of having an erroneous psychosomatic label of any kind on a patient’s medical record, especially if s/he has a ‘controversial’ disease like ME/CFS, can have a terrible impact on the patient’s physical, emotional, and economic well-being; treatment by medical professionals, insurance claims and government benefits for physical disability can all be denied, and one can easily imagine the subsequent consequences.

The case of ME/CFS provides just one obvious example of how major flaws in the criteria for Complex Somatic Symptom Disorder (CSSD) would easily lead to the misdiagnosis of, or inappropriate additional psychological diagnosis for, patients with a poorly understood physical disease that lacks a significant psychological component. As such misdiagnoses or add-on diagnoses could lead to extreme iatrogenic harm, I cannot overstate to the DSM-5 Task Force the importance of removing the category of CSSD.

Additionally, I hope that the Task Force will revisit the conceptual framework of Somatic Symptom Disorders themselves.

I thank you for your time and consideration.

I much fear that the DSM-5 will be published more or less as it stands at present, possibly a bit fine-tuned for innuendo and ambiguity - "evidence has been found that suggests psychiatry may be a pseudo-science" (and incidentally: the innuendo and ambiguity are in the unqualified "evidence has been found"; in "suggests" and in "may": all favourite tools of the DSM-5 editors) - and only then will there eventually be a real public fight, namely if other kinds of medical doctors, or good lawyers, find out about how it will be abused. Or indeed if it gets into the courts in the US, in a major public way also. ("X got locked up as insane, but has disease Y, and now claims 200 million dollars damages for mental and physical cruelty and medical incompetence and malfeasance: Lamed for life.")

Meanwhile, it is good to have arguments, publicly available, including the statements of quite a few patients, such as the above one.

In fact, having studied a relevant subject, being mostly lamed for more than half my life now, without any decent medical or social help, thanks to the efforts of professor Wessely, Sharpe, White, Bleijenberg and Van der Meer, my own view is that form-letters should be designed by lawyers for medical and psychiatrical doctors to sign, with a digest of the complaints against the DSM-5, to the effect that the medical and psychiatrical doctors are aware of what they are doing and that they, or their professional organization, are willing and are able to pay all costs and all  research, medicines and help, if and when a patient with ME/CFS gets worse or gets no relief from either the NICE recommendations or from the GET and CBT-recommendations.

Note that as it is any psychiatrist who grossly slanders, defames, offends or maligns a patient by declaring him or her insane (euphemistically: "a somatoformer", with "dysfunctional beliefs"), and indeed, in the near future, if the APA has its way with the DSM-5, on such a thoroughly insane or at least Soviet-psychiatric ground as that "the patient devotes excessive amounts of time" to what the APA forbids, namely thinking about one's own pains and ill health and lack of income - gets of scot free in almost any case:

Medical doctors who "in the name of 'evidence-based' " pseudo-science destroy the lives, chances and what remains of the health of ill people, namely because these medical doctors lie, posture and pretend "in the name of 'evidence-based science'", should go to jail, and pay the damages of those whose health and chances they destroyed, and indeed so should their professional organizations.

A fortiori, the same for the whole DSM-5 business - which indeed is business: APA tries to appropriate patients' incomes to psychiatrists by effectively declaring most adults insane, especially if they are ill or have health problems, as already is the case with the DSM-IV:

The DSM-5 is likely to be going to be a real killing field, especially if the Western economy remains a shambles or goes into crisis again.

So to prove that either I am insane (for worrying to much) or else quite possibly 4 levels higher in morality than some of the DSM-5 editors there will be more on this topic in Nederlog.

Finally, two interesting links

This the blog of Paula Caplan Ph.D. who is an American psychologist who writes for Psychology Today and who takes science and ethics seriously. I am here not cynical about Dr. Caplan, but I studied psychology myself, and in my opinion both psychology and psychiatry are for the most part  not really sciences - in the way physics and chemistry are: with clear subjects, agreed upon procedures, many proven results and discoveries, and in consequence much human technology based on its findings - and that mostly because the relevant knowledge of how the brain manufactures experience is as yet almost wholly unknown, which makes all of psychology and psychiatry mostly speculative, uncertain, and with very few reliable techniques, findings, or working technologies.

In this context: There is an interesting series in the blogs-series of Phoenix Rising, by one of the members of that forum who calls himself (I think it's a man) anciendaze, who does know science:

This is well-written and informed, and provides a much better insight of what real science is than the editors of the APA seem to have. The link is the first in a series which presently has five entries, and it has a lot of interesting information how real science proceeds, and indeed often does not know.

P.S. Corrections, if any are necessary, have to be made later.
-- 18 july 2011: Made a few corrections.

As to ME/CFS (that I prefer to call ME):

1.  Anthony Komaroff Ten discoveries about the biology of CFS (pdf)
3.  Hillary Johnson The Why
4.  Consensus of M.D.s Canadian Consensus Government Report on ME (pdf)
5.   Eleanor Stein Clinical Guidelines for Psychiatrists (pdf)
6.  William Clifford The Ethics of Belief
7.  Paul Lutus

Is Psychology a Science?

8.  Malcolm Hooper Magical Medicine (pdf)
 Maarten Maartensz
ME in Amsterdam - surviving in Amsterdam with ME (Dutch)
 Maarten Maartensz Myalgic Encephalomyelitis

Short descriptions of the above:                

1. Ten reasons why ME/CFS is a real disease by a professor of medicine of Harvard.
2. Long essay by a professor emeritus of medical chemistry about maltreatment of ME.
3. Explanation of what's happening around ME by an investigative journalist.
4. Report to Canadian Government on ME, by many medical experts.
5. Advice to psychiatrist by a psychiatrist who understands ME is an organic disease
6. English mathematical genius on one's responsibilities in the matter of one's beliefs:

7. A space- and computer-scientist takes a look at psychology.
8. Malcolm Hooper puts things together status 2010.
9. I tell my story of surviving (so far) in Amsterdam with ME.
10. The directory on my site about ME.

See also: ME -Documentation and ME - Resources
The last has many files, all on my site to keep them accessible.

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